| Summary: | Introduction
Data linkage of population data sets often across jurisdictions or linking health data sets or health data with non-health data often involves balancing ethical principles such as privacy with beneficence as represented by the public good. Similar ethical dilemmas occur in health resource allocation decisions. The NHMRC have published a framework to guide policy on health resource allocation decisions that could be applied to ensure the justification of data linkage projects that is defensible as in the interest of the public good.
Objectives and Approach
The four main conditions for legitimacy of policy decisions about access to healthcare in a democracy with a public health system and limited resources were
examined for their relevance to decisions about the use of public data and linking data sets.
Results
Public policy decisions must be defensible and responsive to the interests of those affected. Decision-makers should articulate their reasoning and recommendations so that citizens can judge them. While the context of policy decisions will differ, their legitimacy depends upon (1) the transparency of the reasoning which should be free from conflicts of interest, the basis for decisions recorded and report widely, (2) the accountability of the decision-makers to the wider community, (3) the testability of the evidence used to inform the decision-making, which usually means that it will stand up to independent review and(4) the inclusive recognition of those the decision affects which often requires that the implications for disadvantaged groups are considered, even if they can’t always be accommodated. These conditions are interrelated but ensure that the good of society in general and not just specific dominant groups are accommodated.
Conclusion / Implications
It these principles are applied to decisions about data linkage projects they have clear applicability in society accepting data linkage projects having balanced the good against the ethical risks involved.
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